Coping with Dementia

Posted by Tamara McClintock-Greenberg on October 13, 2017
Witnessing dementia in a parent is one of the hardest things we face as adults. We see our former caretakers become dependent and disabled, often over a long period of time. Even in the early stages of disease, we confront the vulnerability of someone who at one time we viewed as strong and powerful.  The emotional consequences for adult children can seem endless and overwhelming.
Whether we are a direct caregiver  or not, there is constant worry and preoccupation. When will mom get worse?  Is dad yelling at the nursing aides again?  When should we think about memory care? Additionally, one of the most unique aspects of human relationships is that we hold them in mind, and assume they are thinking of us as well. When a parent starts to forget, one of the things we may wonder is how much longer we will remain on their minds.  After all, parents are supposed to worry about us, not the other way around.
Some of the hardest things for adult children managing dementia involve balancing worry and the realization that roles have changed. How people cope with these realities depends, in part, on the history of your relationship with your parent. 
Elders currently living with dementia are part of a generation in which emotions were not generally discussed. As a result, some adult children of people with dementia may not have felt close with their parents, even in homes where they felt taken care of. Maybe their father worked all the time. Perhaps their mother was well-intended but overwhelmed in her role of taking care of children. Baby Boomers often remark that while their parents “did everything for them,” there was not a lot of space to deal with emotional topics.
Emotions are at a surplus when your parent is sick. One key for coping with a dementia diagnosis is not to ignore the range of emotions as they come along.  Adult children often worry if they feel resentful about the amount of energy it takes to deal with their parent with dementia, whether at home or in a facility. Many children do not feel entitled to express frustration or anger.  And at times there can be a culture of competition among those who serve in caretaker roles. It’s as if they need to seem as helpful as possible all the time—to be a Super Caretaker. Try to remember that negative feelings are normal.  There is no one to impress. If you feel pressured about what others are thinking, it’s likely that you are being too hard on yourself.
Of course, when our parents get sick, giving back to them  can be extremely meaningful. But the demands of dementia can tax even the most well meaning adult children, who often have their own children, marriages, careers and lives to attend to. This is where the normal preoccupation of how a parent is doing can become toxic. Worry can take on a life of its own; people feel wracked with guilt when they do anything fun. People can believe that if they are not constantly worried, they are not being a good child to their parent. However, the reality is if you aren’t doing anything fun, you cannot be fully present with your parent.  When children deprive themselves of their own lives and their own pleasure, it not only feeds resentment, it depletes their ability to attend to the needs of their parent.
Optimal coping with dementia involves attending to your own needs and feelings without judgement.  Frustration and resentment are normal. Try not to get caught in a cycle of caregiving in which you think of nothing other than your parent.  As human beings that form deep attachments , we worry and care about those who need us.  But sometimes, over-worrying is an attempt to bypass the needed mourning of losing a parent.  We all want to feel that our parents love us more than anything.  The disabilities associated with dementia are cruel reminders that our parents won’t be around forever to hold us in mind and to make us feel special.  This painful reality is one that can haunt us if we don’t pay attention to it. 
Self-care also involves all the stuff you already know: set limits, ask for help, talk to others who get it. Additionally, exercise is the most powerful behavioral treatment for depression, anxiety and stress. The importance of exercise can’t be overstated, but is often the first thing to go for busy adult children.  Remember the advice we get every time we are on a plane. Put your own oxygen mask on first. Then help others.  
Tamara McClintock Greenberg, PsyD, MS is a psychologist and author in San Francisco.  She is the author of the caretaking book, When Someone You Love Has a Chronic Illness.